A Round For Robbie

We were blown away when Mick Koch decided to organize a golf benefit for Robbie and all the medical expenses that he is going to rack up. Mick is going to be Saree's assistant basketball at Liberty North and his daughter Jessica played for Saree the past three years at Missouri Western. The flyer that is attached has all the information that you will need if you are interested in playing in the benefit. Just click on the flyer to blow it up. The benefit will take place on Saturday, August 21st in Smithville, MO at Paradise Point.

Daycare Update

A huge sigh of relief was let out last week at our house as we found a daycare provider that would take Robbie. After a month and a half of scrambling and searching we were able to have a few great options come to us about the same time. We are very excited to have found a great person and family to watch Robbie for us this school year. It is also very nice with our crazy basketball schedule that we have someone that understands all the chaos. Since her daugter plays basketball for me at Liberty I think she understands the demands. Robbie is in great hands during the day and this really makes Mom and Dad feel very happy.

Whirlwind Weekend

Our weekend started early on Thursday and went completely through Sunday night. We started out with a long trip to Uncle Mike's in Nebraska with a stop in Maryville to drop off Kernel. We finally got to Filley, NE about 8:00 p.m. and had a great time hanging out with the family. On Friday morning I headed up to Omaha for a team camp at Creighton University. Saree and Robbie stayed in Filley all day Friday for a get together that night and to hang out with the family some more. Saturday morning Nate and Kirby drove Saree and Robbie up to Omaha to spend the weekend with our friends Jan and Gabe and their little guy, Barry. After our last game on Saturday I headed out to meet up with the family for the night. Sunday morning we finished camp with two games and then back out to West Omaha. We left Omaha around 3:30 p.m. and headed to Maryville to pick up the dogs. We stayed and had dinner with Grammy, Rog, Nate, Kirby and some of Nate's friends. We finally got back to St. Joseph about 9:00 p.m. It was a very long weekend but a good one spent with family and friends. Robbie is doing really well, just being a little more fussy than normal. We think it's the reflux acting up again but we aren't for sure. Hopefully getting him back on his medicine more consistently will help with these little meltdowns. He is getting so big and really starting to get some thunder thighs to match his arms.

Full House

I got home from basketball camp today to a very full house. There were people and dogs everywhere and it was awesome. In the house were myself, Saree, Robbie, Grammy, Uncle Rog, Uncle Zach, Uncle Nate, Kirby, Great Uncle Bill, Great Aunt Kris, Cousins Jeremy, Mandy, Sean, Lucy, Kernel, Husker, and Tug. Even Great Aunts Marilyn and Diane were here earlier in the afternoon. It was great to get Nate and Kirby here to finally meet Robbie. We had dogs chasing each other, trash talking about the big fishing trip tomorrow and lots of pizza for everyone. I wish we had both of our families closer than they are so we could have more days like this one. To have a full, loud house was something that we haven't had before in our house and it felt really good. It is obvious how much the family loves Robbie, he is a lucky little one to have all the love in his life.

Busy Sunday

We had a very busy, but very good Sunday in Maryville. The day started with the car ride where we loaded up Robbie and the two dogs along with a full trunk of dog kennels, lawn chairs, Aerobeds and a stroller. We started the day off at Pop's and Nana's for lunch and just had some good time to hang out with them and Aunt Caroline. Their household got a little bigger with the addition of Stewy, their new puppy. After their house we headed to Grammy's to lay down and take a nap for a little bit. Grammy and Robbie headed next door to Vicki's house while Mom and Dad took a nap. After that we head to Lades for dinner and to introduce Robbie to Aunt Marilyn. Marilyn is in town from Phoenix for a college reunion and she had the chance to hang out with Robbie for a few hours. After a few hours at the Lades we head back to Grammy's house so Robbie could meet the Peterson's who had just gotten there from a 13 hour trip from Atlanta. The Peterson's are here for the week and we will get the chance to see them later this week. We finally got home around 11:00 p.m. but it was well worth the trip. We have such a great family, that cares so much about us and we are just so happy that Robbie was able to meet all of his Great Aunts and Uncles now.

Also, if anyone has any information on possible babysitters in Liberty if you could let us know we would greatly appreciate it. You can email me at coachmorley@gmail.com.

2 Months Old

We have had a good weekend so far doing nothing but hanging out with Robbie. He has enjoyed all the attention and is really getting a personality. We have been still fighting some of the fussiness, but from what little I know that probably comes with the territory. We are heading up to Maryville tomorrow to have lunch with Pops and Nana and then we are going to Lades later in the afternoon so Robbie can meet Aunt Marilyn. After we go to the Lades the Petersons should be here from their drive from Georgia to meet Robbie too. The rest of the week will be full of visitors as Uncle Zach gets back to town on Monday and finally Uncle Nate gets to meet Robbie. Nate flies in from Palm Springs and Kirby flies in from Virginia on Tuesday. Should be a great week for everyone.

Close Up

Mom was trying to get a smile out of Robbie but could only get a sneeze.

Call Out To All Liberty Blog Readers

We are still looking for daycare for Robbie. We had one set up and ready to go and found out that she can't do it now. We are in scramble-mode now with school starting in about one month. If you have names of anyone that watches little ones and would be willing to take us in we would greatly appreciate it. You can email me at coachmorley@gmail.com if you know of someone looking to take on any more kids.

Thanks.

New Appointment Scheduled & New Friend

Yesterday Carly brought Tatum over so she could hang out with Robbie. They had a great time just looking at each other and crying when the other one did.

We also scheduled our next appointment to have Dr. Gearhart look at Robbie's bladder. The appointment is for Monday, November 29th, so it looks like we will be spending Thanksgiving out in New Jersey. The only thing that might change that date is if we can get in to Dr. Levitt in Cincinatti that specializes in the Pediatric Colorectal area. Dr. Gearhart put us in touch with him and to no suprise to me, he responded back to us within 30 minutes. We are in the process of doing all the paperwork to get into see him. Dr. Levitt is one of the world's best in his field and Dr. Gearhart works with him quite a bit on cases like ours.

Ready For Football Season

This one's for you Peterson's. I guess I'm a Georgia Bulldog football fan now. Guess there could be worse teams to cheer for. GO BULLDOGS!!!!

Robbie's New Friends

Robbie was able to meet a lot of people so far this week. On Tuesday Robbie was able to meet one of my best friends Chad and his kids, Ava and Gavin, and his Mom Rita Ann. They are in town from Phoenix and made the trip down from Maryville. It was great to see them and for Robbie to meet Ava and Gavin. We had a good night eating pizza and hanging out. I have never seen a 4 and 2 year old like black olives like those two did, amazing.

Weekend Update

We had a pretty busy weekend but it was a lot of fun. On Saturday we headed up to Maryville for Scott and Beth Courter's reception. We weren't able to go to Mexico for the wedding so this was a great opportunity to see them and wish them good luck. While we were in Maryville Grammy was able to hang out with Robbie, he loves hanging with her.

Today we had to run to Liberty so Saree could get ready for her basketball camp tomorrow. When we got back from Liberty we headed over to the Kramer's house for Kellyn's 2nd birthday party. It was really nice to be there, with a lot of little ones running around and eating Dora cupcakes. Also today, Uncle Rog stopped by on his way back from Maryville to see Robbie.

We are going to have a very busy week this week with Saree having basketball camp in Liberty and I will be working basketball camp at Missouri Western in the mornings. We have set up a few people to watch Robbie in the mornings, so hopefully he acts like a big boy, at least for a few hours.

Other than that, not much else going on here in the Morley house. Robbie slept really well last night and we are hoping he can repeat that performance tonight.

Back Home

The flights went well and Robbie did a pretty good job on the planes Wednesday. We got back home about 7:00 p.m. on Wednesday and have just tried to get back into our normal routine. Last night he slept in his big boy crib for the first time instead of the Pack & Play bed in our room. He lasted about 3 hours in there before he needed fed, but it was nice for him to actually use his room.

We went down to Children's Mercy today for his first follow-up visit after his surgeries. They did an ultrasound of his kidneys and everything checked out just fine. After a 1 1/2 hour wait to see the doctor we came to the reality that having the bladder and pelvis surgery at Johns Hopkins was a no-brainer. The doctor that would do his surgery at CMH has done 10 of the bladder surgeries, about 1 per year. Dr. Gearhart is hoping to do his 1000th surgery this year...enough said.

We go back to CMH on July 28th to meet with a doctor that would possibly do the poophole surgery. It won't be Dr. Murphy that does the surgery and we are pretty nervous about another doctor doing it. Dr. Gearhart said that whoever did the stoma would be more than qualified to do the poophole. Since it's not Dr. Murphy performing it now we might look more into the hospital in Cincinatti that specializes in this surgery.

Other than that not much else has been going on. Like I said, just trying to get him back into a good routine and hoping that he sleeps better at night. We will continue to keep you posted on how the little guy is doing.

Last Day In New Jersey

Well, we head back home tomorrow afternoon so we are spending our last day in New Jersey just beating the heat. They are calling for record highs here today so we are inside watching the World Cup. Robbie has been very good the last few days, not many meltdowns and lots of smiles. The swelling on his head is almost back to normal and makes all of us feel a lot better. He is eating much better and sleeping well at night. The last three nights we have only had to get up once each night to feed him.

When we get back home it's back to reality. Saree has basketball camp next week and I have one the following week. After that the first day of school is just around the corner. We are really going to miss hanging out with Mimi, Uncle Jer, Aunt Mel, Bryce, Caden and Clara. Because of all the trips to Baltimore it feels like we just got here. We hope everyone had a great 4th of July and our next post will be from home.

Here is a link to some pictures from our trip here in New Jersey.

http://gallery.me.com/cmeccage/100090

Update: Friday, July 2nd

Robbie had a great day today after a rough night last night. His stomach was really bothering him yesterday and last night and made for minimal sleep for Mom and Dad. At 5:30 a.m., after feeding, he got rid of an air bubble that had been bothering him all over his Dad. He must have lost his entire bottle because it just covered the entire front of my shirt. From that point on he has been back to his old self; eating, sleeping, smiling and just being a great little boy.

Uncle Jeremy and Cousin Bryce took me to the AT&T National golf tournament in Philadelphia today. This is Tiger Woods' tournament and we were able to watch Tiger par his last hole from about 50 feet away, pretty cool. Mom and Robbie stayed here in New Jersey with Aunt Mel and Cousins Caden and Clara. Robbie was an angel for Mom today, they even were able to take an hour long nap together.

My hope is that the blogs will be boring like this until we fly home on Wednesday. That would mean no ER trips, treks to Baltimore or anything else like that. Robbie wants to wish everyone a great 4th of July and that we really appreciate all the thoughts and prayers coming his way.

Back In Jersey

We got discharged from the hospital about noon today and got back to Mimi's about 4:00 p.m. Robbie was really good last night and today in the hospital, sleeping most of the night. The second we got back to Mimi's he flipped a switch and has been a pistol. We think the acid reflux has kicked back in because he didn't get his full dosage the last few days. Hopefully by tomorrow we can get him back into his routine and his stomach feeling better.

It was great to have all the doctors and nurses to answer our questions about the bladder exstrophy, imperforated anus and other things. Pam, a nurse for Dr. Gearhart, was a very good resource for us this morning. Not only does she work in the bladder exstrophy area but also adopted a boy from Russia, Uri, with bladder exstrophy. She adopted him when he was 10 years old and now he's 22. She was able to really give us great advice about how to make sure Robbie just lives his life and doesn't let the exstrophy affect his mindset. She said that really the bladder exstrophy is harder for the parents because they are the ones that have to deal with everything right now, we totally agree.

Dr. Gearhart gave us some good news that we didn't know before yesterday; Robbie can get normal baths and go swimming in a pool or even the ocean. No ponds, lakes or rivers because of the bacteria in the water, but to give him a normal bath will make things a lot better. Also, being able to take him to the pool will be very nice.

We just want to thank everyone for all their support and prayers. It is still amazing to have so many people care about our family and give us unbelievable support in these tough times.